disability – Page 2 – PowerchairDiaries

The Kind of World we Live In

By Mark E. Smith

Every night at 10:00 pm, I flip through the cable news channels. With redundant sound bites and flashing scenes – not to mention partisan political rhetoric – I’m told what a terrible world I live in. If I am to believe them, my life in every fathomable way is on the brink of disaster – and so is yours. If texting drivers and terrorists don’t kill us, our jobs will be downsized and exported, and our children will end up on heroin. But, then they go on to note that if we make one wrong vote, we will lose civil liberties and nuclear proliferation will usher in World War III. However, none of this matters because whatever the latest virus is, it’s likely to kill us before all else.

This is how the news media portrays our world night after night. Yet, day after day, my life – the world we share – couldn’t be more different. As one with a severe physical disability, the world of intolerance portrayed by the media that we live in should place me drowning in the bottom of a cruel socio-economic barrel. Yet, I’m not – and, in fact, my world, your world, our world couldn’t be more different than the distorted, sensationalism hyperbole spewed by make-up-strewn talking heads on cable news.

What 45 years of disability experience has proved to me is the truth of humanity. People are kind, accepting, embracing and tolerant. We know that we’re all in this together, and while my adversity is an obvious physical one, we all have known adversity, and it’s among the bonds that unites us. We all want to love and be loved, and as my career has taken me to countless cities and towns across this country, every where I’ve been has demonstrated one universal trait: kindness.

As one with a severe disability, who speaks and looks differently than others, who must turn to strangers for assistance in situations, who flies on planes and lands in cities, I see none of the harsh, cruel world portrayed by the media. I see the flight attendant offer to walk with me through the airport to ensure I find my shuttle van. I see the shuttle van driver insist on tying my shoe. I see hotel clerks ensure all I need is taken care of. I see waitresses intuitively move everything where I can reach it. I see individuals homeless say words of blessing to me. I see strangers in stores, restaurants, everywhere, share the kindest words and hug me.

I don’t know where the media gets its soundbites and images of the bleak world it portrays. But, if they followed me for an hour, in any city in this great country, they’d see the truth: the kindness of the world around us is awe-inspiring. Turn off the TV and get out into it.

The Indirect Routes of Growth

By Mark E. Smith

Growth. It’s never linear. I know we want it to be – in our educations, relationships, careers, finances, even in our hearts.

But, it’s not the way personal growth works. More importantly, linear growth isn’t what would best serve us. Therefore, by design, growth isn’t linear.

Many aspects of growth in our lives have an idealized route that we conjure in our wishes, our goals. We want to get from A to Z as easily and quickly as we can.

I want to loose 100 lbs.
I want to settle down with the person of my dreams.
I want to become a vice president in my company.
I want to be financially stable.
I want to graduate from college.
I want to be sober.

The I wants in all of our lives go on and on. However, if they were just achieved, how would we grow, what would we learn? See, the beauty of non-linear growth is that it challenges us to embrace perseverance, to learn creative solutions, to have gratitude, to… well… grow.

Personal growth in our lives can be difficult, if not painful at times. It often doesn’t seem fair or just in the stalls, setbacks or unwanted changes of course. Yet, those, in fact, are purpose-filled times. Those are the times when we actually do grow.

In these ways, let us not look at the non-linear times in our lives as unfair or unjust – the stalls, setbacks or unwanted changes of course. Instead, let us recognize their true purpose: launching pads for growth.

[Speed = Distance / Time]

By Mark E. Smith

Among my routine rituals is running my power wheelchair through my company’s test lab “speed trap.” I’ve perfected aspects like tire air pressure, straight-line tracking, and battery type to get my production chair just a scant faster than it’s built to run. In this process over the years, I’ve learned a bit about life, too.

The mathematical equation for speed is [Speed = Distance / Time]. Put simply, how long it takes you to cover an amount of distance is how fast you’re going. As I’ve run my straight-line speed trap hundreds of times – a computer system measuring my distance over time to calculate my speed – I’ve realized it’s a metaphor for life. Our successes and failures are dictated by the same equation, how much or little progress we make over an amount of time impacts our lives.

See, if in our lives, we cover little distance over time, we’re not progressing. Think about our relationships, careers, finances, you name it – if it’s all where it was five years ago, with no progress, our distance over time is dismal. Our lives are stalled or even destructing.

To the contrary, when we make quick, rash, hasty decisions, jumping from one life path to the next, we’re moving so fast that we’re bound to make mistakes. Racing through life impulsively, without considering consequences always results in disasters.

The key, then, is to look at our lives as [Speed = Distance / Time] and find that optimal balance, where we’re making great progress, without making poor decisions or mistakes.

What I’ve learned in the speed trap – and life – is that the right speed is prudent in practice, but still a little faster than average.

Straight, No Chaser

By Mark E. Smith

I’m sure as a younger child I questioned it all. But, by adolescence, I was just me, and there was no room for me or anyone to question it. I mean, it was questioned – who I was because I was different, my disability seemingly made me different – and it would occasionally sting in the moment. However, I ultimately understood I was who I was, I am who I am, let’s get on with this.

The jazz great, Thelonious Monk, was of that spirit, too, long before I was born. During the 1940s through the 1960s, when you had the greats like Duke Ellington, Miles Davis, John Coltrane, Dizzy Gillespie, Charlie Parker and Billie Holiday evolving Jazz in a linear form, Monk was innovating on the piano in ways no one had ever seen.

Monk was first and foremost a composer, with musical eccentricities that few could follow. Improvising was a staple of jazz in that era, but his obsession with improvised composition on stage made him a lone wolf, where he didn’t care what the band played or what the audience wished. Monk simply followed his passion key by key, note by note, reveling in what he discovered in the moment, oblivious to all around him. Often, the only queue to what he was playing was his right foot keeping time. He just played as him, and whether the world followed didn’t matter. John Coltrane said, “Working with Monk is like falling down a dark elevator shaft,” and Miles Davis for a time refused to play with Monk due to Monk’s defiance toward staying in line with the rest of the band. In the refined world of jazz performance, Monk was also known for stopping playing mid song, getting up to dance alone as the rest of the band played on. Indeed, Monk was Monk, and he wouldn’t meet arbitrary norms.

In the process of being him, Monk ultimately lived an obscure but free life, where beyond his immediate circle, he was generally unknown during his career, never getting the fame of his contemporaries. Yet, in the process, he composed an astounding body of recorded work, only second to Duke Ellington. Monk largely disappeared from 1971 till his death in 1982, struggling with mental health issues along the way. Posthumously, he was granted a Pulitzer Prize for his body of work, and is subsequently now known as among the greatest jazz composers and musicians of all time.

How many among us just want to be themselves, follow their hearts and passions regardless of what anyone else thinks? Yet, many don’t out of fear of rejection or not fitting in. For all of us, Thelonious Monk left us with striking words of wisdom: “I say, play your own way. Don’t play what the public wants. You play what you want and let the public pick up on what you’re doing – even if it does take them fifteen, twenty years.”

That Man – Spoken Word Video

Transcript:

That man. That man. No Sam I am, but I am a minority, rolling with authority, living life proudly as who I am – because, man, I am that man.

No, I’m not a misfit, but a paradigm shift, where when the world says I can’t, and I say screw you, Captain Sulu – because I can. Man, I am that man.

Like a two-dollar bill oddity disband, I can thrive and jive – on the dance floor, had a boombox back in ’84 – and the band plays on and on and on like the wheels rolling on my chair, wind blowing in hair. Because, man, I am that man.

There’s no price of admission – disability isn’t a curse or condition – it’s just the way it is, say it like it is, live it as it is – screw those with ignorance, where what some call a hairdo is really just friz. Because, man, I’m that man.

Bold and determined, bulldozing like a tank named Sherman, I am a minority, and I’ll use my authority to make the world stand on end – screw you, I refuse to pretend who I am, because I’m proud to be me, all that you see – shout it, cerebral palsy – because, man, I am that man.

Projecting Oneself

By Mark E. Smith

My friend texts me from a restaurant on New York City’s Upper East Side. He explains that it’s full of those who are ultra-wealthy, and they’re acting awkwardly toward him, as if they’ve never seen a person using a power wheelchair. He further texts that there’s an attractive, older women next to him who seems possibly approachable.

“Say to her casually, ‘I’m just back from London, and I’m amazed at how warm the weather is here,’ and see where the conversation leads,” I text back.

Of course, my buddy has never been to London and, yes, my reply was sarcastic.

We live in a culture where people may make totally uninformed, ignorant presumptions of us – and we can feel it sometimes, can’t we, like my friend in that restaurant. They perceive us as they wish. I mean, think about all of the stereotypes people can make about a gentleman using a wheelchair in public. And, it’s so easy for those of us who use wheelchairs to absorb those. It would be understandable for my friend to want to avoid that restaurant scene and high-tail it out of there. But, there’s every reason to stay.

No matter who you are – disability or not – you have far more control over such situations than you likely know. The fact is, just as others attempt to perceive us, we can completely project who we are, totally reversing the process. My text to my friend wasn’t meant for him to literally lie, but rather to imply gaining comfort in his skin. There was no reason for him not to fit in. It wasn’t up to those in the restaurant to tell him who he was; rather, he had the power to project who he was.

Being humble is among the most admirable traits. However, feeling as though you need to apologize for who you are should never be in our emotions. I use a power wheelchair, with severe cerebral palsy, right down to muscle spasms and labored speech. At 44 – and it took me a long time to get here – I don’t feel awkward in who I am, and I certainly would never apologize for who I am. As I go through the entirety of my daily life, I am who I am, and I’m not making an issue of it, and neither is anyone else, per me. Here I am, as I am, period.

And, that’s what I’ve learned: We teach people how to treat us by both how we view ourselves and what we project. If I’m in a conversation and I spasm, I correct my posture and keep with the conversation. If I don’t make it an issue, typically neither does anyone else. It’s amazing how our reactions and projections can completely dictate how others react to us. Just be you, and you’ll be impressed at how others recognize you as just that.

As for that awkward restaurant scene, how would I handle it? …I would just be myself.

The Most Sacred Trust

By Mark E. Smith

Every week, I take a leap of faith on this blog and write essays that are often very personal and expose vulnerabilities about myself that I know can range from liberating to uncomfortable for readers. Yet, there’s a deep meaning and purpose to it all. Firstly, as a formally-trained writer, I was taught that if you’re truly going to write, you owe it to yourself and your reader to write with unflinching courage, to expose that which others may not dare, all in the name of integrity – the best writing is fearless and scary all at once. Secondly, there’s such power in universal experience, where if through sharing my own vulnerabilities I can help someone else embrace his or hers, realizing that none of us are alone in life’s challenges, that’s a tremendous privilege. I write to connect, and that demands unflinching honesty, candor and authenticity.

However, here’s what might surprise you: I don’t believe that this unyielding, wide-open form of trust should be practiced in our personal lives. The fact is, whether a child or a so-called hardened criminal, there’s a fragility within all of us – our inner-most vulnerabilities. And, they aren’t to be trusted with just anyone. We’re too valuable to risk handing over our emotions to those who may not honor, respect or deserve them.

Many of us know a lot of people, many of whom we call family and friends. For me, I can’t even count how many people I know. All are wonderful people. Yet, if you think about your own friends and family – as I do mine – how many have truly earned your trust to possess the capacity to treat your deepest vulnerabilities with the safety and security you deserve?

Chances are, not many. Unfortunately, we’ve often learned this in the most painful ways. We’ve shared our most vulnerable selves with someone, only to have that person attempt to hurt us with it later in scorn or judgement at the most opportune – make that, malicious – of times. True family and friends don’t use our vulnerabilities against us. Rather, true family and friends treat our vulnerabilities as sacred, those which are to be addressed with compassion, empathy and support.

So, how do we know with whom our deepest vulnerabilities are safe? For most of us, it’s a tiny fraction of those who we know, maybe only one or two people. And, the litmus test can take time, often years. See, true trust isn’t assumed; it’s earned, piece by piece. You share a little, see how that’s handled by someone over time, and if it’s honored, you share a little more, until ultimate trust is earned. Along the way, let us not be guarded, but aware, as if we witness the slightest violation of trust, it’s a sign to put on the emotional brakes and realize that person may be a loved family member or great friend, but not one who we can trust in our most sacred places – again, that’s reserved for those who’ve earned it.

By far the toughest practices of setting boundaries of who’s earned the privilege of being trusted with our deepest vulnerabilities is in romantic relationships because the emotions are so intense and the stakes are so high. In our desire to love and be loved, it’s far too easy to dismiss violations of our vulnerabilities. He only said it out of anger during our argument…. No, there’s never a reason or excuse to use someone’s vulnerabilities against him or her. That’s not love, its betrayal – and that never makes for a relationship you deserve. I married my wife for a lot of wonderful reasons, but the big one was our mutually-earned trust. Sure, we get mad and frustrated with each other, but we know that each other’s vulnerabilities are the sacred boundary line that we respect above all else. I’m also blessed that this ultimate sacred trust holds true with both my oldest daughter and my lifelong best friend.

When it comes to our vulnerabilities, let us seek comfort in others – it’s healing for the soul. However, let us likewise know that our vulnerabilities shouldn’t be entrusted to anyone except those worthy of respecting and cherishing such a gift. See, when it comes to ultimate trust, it’s quality, not quantity, that serves our heart.

The True Meaning of Weakness

By Mark E. Smith

I love working out because it’s such a humbling experience. See, people often trick themselves into believing that working out is about strength; however, it’s literally an exercise in embracing weakness. After all, if you’re putting your all into your workout routine, you do so till failure, finding your ultimate weakness every time. If you’re doing it right, you never leave a workout accomplished but defeated.

Yet, what’s fascinating about working out is that by consistently acknowledging your weakness, it ultimately makes you stronger. This goes for all of life, where our greatest strengths originate from our truest weaknesses. If we wish to live to our best, we can’t focus only on our strengths, but we have to be wise enough to embrace and pursue our weaknesses.

I come from a lineage of addiction, and I’ve never thought myself stronger than it. I was born into it, science says it’s in my DNA as a genetic component, and was further solidified by the environment I was raised in. By all accounts, I statistically should be – and could be, as it’s never too late – an addict. It would be easy for me to say that I’m too level-headed or strong-spirited to be an addict. But, the fact is, it’s knowing my weaknesses toward addiction that have kept me off of that path. I’ve known my risk factors, and knowing my predisposed weaknesses within me keep me in check. I’m not inherently stronger than addiction, just wisely aware of my weaknesses. If you know you can’t out-wrestle a bear, stay away from bears!

Having a disability, my physical weaknesses are always front and center – at least as society recognizes them. After all, we live in a culture of hyper portrayals of masculinity and femininity. Men should be strong and independent, and women should be sexy and elegant. But, physical disability can make living up to those standards not just impossible, but excruciating. As a result, it’s so easy to push disability weaknesses – read that, vulnerabilities – down in denial or shame, especially when it comes to how the so-called weaknesses and our romantic partners interrelate. However, if you’re willing to expose and embrace your seeming weaknesses, it will take your life and relationships to a far deeper, rewarding level.

I’ve always had a whatever-it-takes attitude, and it’s served me well – that is, except when I’ve used it to mask disability-related weaknesses. I’ve spent decades struggling to use the toilet, where poor balance and poor coordination made the transfers a constant nightmare. I could never use the bathroom in the morning because I lacked the balance and coordination, and then in the evenings, falls from transfers weren’t uncommon. In my mind, my thought process was, no matter how hard it all was didn’t matter – I’d rather die trying than accept help. In my skewed, macho mind, what was less manly than having my wife help me transfer onto the toilet?

However, it was tough for my wife to see and hear me struggle. And, one eve, she just came up, tucked her arms under mine, and together we slid me onto the toilet, then off. It took a lot for me to accept that help, but it immediately made my life one thousand times easier. Yes, I had to admit a weakness to myself, that independently transferring onto the toilet was a huge problem. However, as a result, I summoned far more inner-strength and confidence by being secure enough in who I am to embrace such help from my wife – and it’s enhanced my life and our marriage.

From what I’ve learned in my own life, I don’t know why “weaknesses” in our culture are seen in such a poor light. After all, when weaknesses are embraced and addressed, they can be the ultimate form of strength.

The Iris Effect

By Mark E. Smith

Ninety-four year old fashion icon, Iris Apfel, once said, “I’m not going to be a rebel and offend anybody, but I’m not going to live in somebody else’s image.”

Being somewhat of a public figure, I recently was engaged in a several-day online banter with an individual being very critical of me, to the point of irrational. Still, I felt the need to respond to his criticisms. For one, I didn’t want false statements about me left unaddressed in a public forum, and secondly, I was trying to be respectful and not ignore the individual. I didn’t take it too personally, but I also didn’t just let it emotionally go – and logistically it consumed a lot of time. However, I finally realized I didn’t deserve to be treated that way, and I didn’t care what else was said of me – and I simply ceased the unhealthy dialogue. I know who I am, I know what I do, and I’m proud of it all, so there’s no need to waste time with concern over others’ opinion of me – good or bad.

Most of us have been in this type of predicament, sometimes more serious than others, right down to abusive. I mean, maybe you know what it’s like to be inappropriately criticized, judged or condemned by others. And, it’s most painful when it’s by those who claim to love us. Something as small as a comment like, “You’re not going to wear that, are you?” after we’ve gotten dressed up can sting. Of course, situations like when parents stop talking to a child because he or she came out as gay can crush. From tiny comments to huge judgments, it all just hurts, doesn’t it?

But, there’s a way to stop it all, to take away the pain – and, more importantly, remove the power of others from effecting us. We need to realize that, if we’re good people, living good lives, no one has the right to criticize, condemn or judge us, period.

As I grew up with a severe disability, it was always in the back of my head whether others would accept me? This insecurity extended well into my adulthood. Granted, I was really good at concealing it, where self-confidence was a mask I wore. However, in my 30s – and it’s unfortunate that it took me that long to come to such a simple truth – I realized that I was to be accepted as I was, and I didn’t need anyone’s approval toward my having a disability. It’s really a brilliantly childish life strategy: I don’t need anyone to accept me because I don’t accept anyone who doesn’t accept me. It’s my ball, and if you don’t like the way I play, then I’m taking my ball and going home!

See, the prize is in you and me, not those who criticize, condemn or judge. I’ve run into several circumstances where friends have come out as gay to their parents, only to be shunned. Again, imagine how painful it is to have your parents shun you. However, who should shun who in such a circumstance? It’s painful and hard, but a child needs to say to his or her parents, I’m your child and I deserve to be loved as-is, and guess what, folks, until you love me as I deserve, you’re going to have an empty chair at the dining room table.

Life and relationships are full of compromises, but our intrinsic value isn’t. We shouldn’t live to others’ criticism, condemnation and judgment. I know, it can be hard to break free of investing in what others think of us, especially when it’s gotten to a toxic level in family dynamics and relationships. Yet, we owe it to ourselves to be our own cheerleaders, champions of the self, where the only opinion that counts is our own, based strictly on the positive, meaningful lives we lead.

At the Heart of Smiling

Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing. ― Mother Teresa

By Mark E. Smith

My father-in-law, a retired pastor, told me a great story over dinner.

He said, “My best friend, Gary, and I were both pastoring, and I noticed that at the end of services, everyone hugged Gary, while they only shook my hand. So, I asked Gary why that was? Gary replied, ‘You stick out your hand, while I open my arms….’”

What the two pastors were really discussing was that we receive what we offer. If you want a hand shake, put out your hand and you’ll get one. If you want a hug, open your arms and you’ll get one!

For me, I’ve always smiled. From as young as anyone can recall of me, I was always smiling. Part of it is my innate disposition, but the other part of it, as I’ve come to understand, is an appreciation for life. I’ve been through my share of adversities – and will forever struggle with some – and it’s gratitude toward all of it that keeps a joyful smile on my face.

However, smiling is more than only about my disposition or gratitude. It goes back to the conversation the pastors had. Truly, if you want to see the world smile, smile at it. I often share this story. I was at Walmart with my sister several years ago, and she noted how friendly and nice customers and employees were to me – the complete opposite of her experience of everyone being somber. I asked her to watch as we continued shopping. Per my usual, I smiled and made eye contact with complete strangers where that led to an exchange of a friendly how-are-you? “Just smile at people,” I said. “It changes everything.”

I’m at the point now where I smile at pretty much everyone. On my route to work, a crossing guard shared with me that she learned who I was by asking a friend in the neighborhood, “Who’s the guy in the power chair who’s always smiling?” If I’m at a stop light in my van, I’ll smile at those in cars next to me, and it’s amazing how a gruff guy’s demeanor will change or a woman will blush – a smile is a powerful exchange.

And, there’s science to this all. Firstly, smiling triggers a happiness feedback loop in our brain, so whether we smile because we’re happy or we become happy because we smile, it works. Secondly, numerous studies have shown that smiling increases our success, from home life to career. The average person smiles 20 times per day, whereas ultra-successful people smile 40 to 60 times per day. Smiles are warm, inviting and sincere – they’re a people magnet because we’re drawn to happiness.

Of course, I do run into being stereotyped sometimes based on my smiling. Well-meaning individuals noting my cerebral palsy come right out and ask, “How is it that someone in your predicament can find a reason to smile?”

I just smile and reply, “A life where you smile at the world and it smiles back at you is a fortunate predicament to be in….”